Woman seeks to raise awareness of disorder
Sunday, September 23, 2007
URBANA — The obscure disorder on Carrie Marenberg's new Web site afflicts about 300,000 Americans. That makes it more prevalent than cervical cancer, the target of ubiquitous TV advertising.
"And so many people more than likely have Chiari malformation, but don't know it," she said. Her own doctor only learned about Chiari from her MRI report last February.
Marenberg had to look it up on the Internet to find out it meant the bottom of her brain extended out of her skull, crowding the spinal cord and blocking the flow of spinal fluid to and from the brain. "Oh my gosh!" she said. "My brain is not where it should be."
After that first reaction, Marenberg made it her mission to help doctors and patients recognize Chiari.
• Her Web site offers information about the disorder and enables people to discuss their often-debilitating symptoms and contact other sufferers at www.freewebs.com/carrieschiariconnection/.
• She organized Chiari Awareness Day on Sept. 29 in Cincinnati, bringing patients together with expert speakers. The $10 fee will raise funds for patients who need money for treatment and drugs, but often can't work.
"It's not only the general public that doesn't understand Chiari, but also the doctors," said Marenberg, who just turned 36 and works full-time building airplane lights at Honeywell International in Urbana. Her ultimate goal is for doctors to know enough about it to reflexively order diagnostic MRIs when patients have symptoms.
Until then, she said patients will need enough information to tell doctors, "Hey, what about Chiari?"
Patients typically endure decades of repeated misdiagnoses. Marenberg's headaches began as a toddler, but doctors ruled out migraines or sinus problems. They've repeatedly scanned her brain, tested her blood sugar, checked her eyes and wired up her heart.
The symptoms worsened in the last four years, with dizzy spells, frequent fatigue and heart palpitations with slow heartbeats, skipped beats and racing ones "like when someone scares you and you gasp for air." She'd pass out, sometimes losing sight and hearing while still conscious.
Her concentration evaporated in a "Chiari fog," leaving sentences unfinished or getting lost in familiar areas. Her three teenagers would point out that she just said, "Go let the leash outside," when she meant the dog.
Her neck hurt constantly. It took four doctor visits for neck pain before the MRI needed to diagnose Chiari.
Marenberg could undergo surgery, removing skull and spinal bone to relieve pressure where her brain doesn't belong. But it's risky and doesn't always help, so she's trying drugs and procedures.
The worst pain comes suddenly, Marenberg said, and feels like her head "is about to explode. You grab your head, the top and sides, and push like you're trying to hold everything together."
Even without much symptom relief, knowing what's wrong helps. She knows not to ride any more roller coasters. She has learned to avoid the worst of that upper-neck pain by yelling less loudly at her son's football game. And she no longer doubts her sanity.
"It's very frustrating, hurting day after day and not knowing why," Marenberg said. "I felt like a hypochondriac. I also went into a very severe depression.
"So when I finally found out what it was, yes it was hard to swallow that I had a brain malformation, but at least I know what was causing me to feel the way I felt."
Signs and symptoms
of Chiari malformation
Most Chiari patients complain of severe headache and neck pain. Other common symptoms can be:
Dizziness; balance problems
Heart palpitations
Chronic fatigue
Muscle weakness
Blurred or double vision
Difficulty swallowing or excessive throat clearing
Impaired fine motor skills
Painful tingling of the hands and feet
Difficulty concentrating
For more Chiari info:
www.conquerchiari.org
www.chiariconnectioninternational.com
Chiari Institute of the North Shore-Long Island Jewish Health System: (516) 570-4400 and www.northshorelij.
com/body.cfm?ID=6407
How to go
What: Chiari Awareness Event
When: 3 to 7 p.m. Saturday
Where: The Reading Terraqua Club in Cincinnati, at 7713 Dimmick Road
Who: Speakers include Chiari patient Raphael D'Alonzo and two Cincinnati neurosurgeons who have done surgery for Chiari malformation: Dr. Francesco Mangano for children and Dr. John M. Tew Jr. for adults
Cost: $10 per person; free for children 9 or younger. Includes DJ music, silent auction and dinner of hamburgers, hot dogs, shredded chicken and drinks. All proceeds go toward medical expenses of Chiari patients
More info: e-mail carriebear31@msn.com or visit www.freewebs.com/carrieschiariconnection/.
Contact this reporter at (937) 225-2129 or klamb@DaytonDailyNews.com.
